Commercial fishing season has started in the Lower Cook Inlet. It should be a a very strong season with a return of tons of hatchery fish. For me, missing the season due to my past illness is just another setback or another reminder that cancer takes everything it can from its victims.
I'll settle for dipnetting this year. The Copper River dipnet season has started so I'll try it out this Thursday. It will be two days away from cell phone coverage and one night of sleeping next to the river in a small tent hoping the bears don't visit us during the night. My oldest son, David will be with me. It will hopefully be a positive moment to remember. I'll let you know when we return.
Wednesday, June 29, 2016
Thursday, June 23, 2016
Fading problems
A month ago, I was experiencing tumors, muscle cramps, fatigue, vision problems, dizziness, cognitive impairment and other problems that I'd rather forget. For the past two weeks, it's down to fatigue and cognitive loss. That's it, no cramping or tremors.
I can deal with both of my current side effects. The fatigue can be extreme so I just have to rest after a couple hours of manual labor. The cognitive loss is mostly noticed by myself. I've never been accused of being the sharpest tool in the shed so other people don't really notice when I can't remember their name. People aren't too surprised when I ask for the date, even though I'm asking for the day, month AND the year.
These problems are minuscule compared to previous side effects so I'll cross my fingers, knock on wood and hope that it's a sign of the future. If this is all that's left, I can deal with it.
Mike,
Date: sometime in the Summer in the year after the transplants (I think)
I can deal with both of my current side effects. The fatigue can be extreme so I just have to rest after a couple hours of manual labor. The cognitive loss is mostly noticed by myself. I've never been accused of being the sharpest tool in the shed so other people don't really notice when I can't remember their name. People aren't too surprised when I ask for the date, even though I'm asking for the day, month AND the year.
These problems are minuscule compared to previous side effects so I'll cross my fingers, knock on wood and hope that it's a sign of the future. If this is all that's left, I can deal with it.
Mike,
Date: sometime in the Summer in the year after the transplants (I think)
Monday, June 20, 2016
Time to rebuild
One of the many symptoms for a tandem transplant patient is weight loss with much of the weight coming from muscle. Each time the doctors would tell me about symptoms that were present for all patients, I tended to be the rare exception. For several months, I maintained my weight within a couple pounds. The medical team said my lack of weight loss was very unusual. They didn't know why I was so different from the norm.
After the worst treatments were over and most people would start to gain weight, my body finally started to lose weight, including muscle. The symptom hit me about three months after the allogeneic transplant and about three months later than normal. The good news is I had some weight to lose and it didn't go too far as it does with many patients. Some end up looking far too thin with massive muscle loss, needing assistance to walk or to complete ordinary tasks. The result of my weight loss was not nearly as severe. I'm at the correct weight for a person of my height but much of the muscle is gone, making it difficult to lift heavy objects or to walk for a long distance.
It's time to rebuild my strength. They say it comes back in about a year. I'll start working to rebuild and continue to feel grateful that my current concern is simply muscle loss. It could be so much worse.
Thursday, June 16, 2016
All results!
All of the results are in for the recent tests in Seattle. Now I can admit that these were cause for concern. Since my version of myeloma was so aggressive, I did have a slight worry that the cancer could have grown over the past three months. Instead it's all good news or even great news!
Blood test: This test looks for something called M-spike or monoclonal spike. It's an indicator of the amount of cancer cells in the blood stream. The results of this test were the same as in January. There is a trace amount of cancer cells still in my bloodstream. The score I received was 0.1. It's about 700% lower than scores from several months ago.
PET scan: Positron emission tomography is used with a radio active tracer to find active tumors. The PET scan found no active tumors. The large tumor in my right shoulder is completely gone.
PET scan: Positron emission tomography is used with a radio active tracer to find active tumors. The PET scan found no active tumors. The large tumor in my right shoulder is completely gone.
Bone marrow aspiration: A core sample of bone marrow is pulled out of the hip. The sample is studied to determine the amount of cancer cells within the marrow. This was the last procedure. They did the aspiration on Monday of this week. The call came in this morning. The results were a big zero! They didn't find ANY cancer cells in my bone marrow.
The doctors are extremely pleased with these results. So am I. It has been an incredibly long journey. It's still not over but I feel that the end of sickness is near. I have always been certain of an eventual cure. My optimism was and still is supported by so many great friends and family who have constantly been there, regardless of my poor health and occasional depression. When I am completely cured, I will have so many people to thank because I could not have gotten through this alone.
Sunday, June 12, 2016
More Results and a Woodpecker
The PET scan results are great. There are no active tumors in by body. The shoulder tumor is completely gone. It's great news and I'll take it as a sign of a path to a cure. I haven't always done this well on tests. My college exams usually scored high but not always. I was explaining my worst college test to a cousin a couple days ago. She said I should add it to the blog. It has nothing to do with cancer but it did hurt more than any cancer test I've ever experienced.
I was walking through the woods, on my way to a music history final exam. There would be questions like "Who is this composer and what information brings you to that conclusion?" The professor, a Hungarian music professor with a thick accent would drop the needle on an obscure piece of music and give us three minutes to complete the answer. She would also ask us about various forms of instrumental music, then vocal music and every combination of solo or ensemble works. It was a difficult test but I felt ready and confident. Getting an "A" on the final would assure and "A" for the class.
The next thing to happen, as I was walking along brought great joy to the college medical clinic. It was such a rare occurrence that the word spread throughout the college as a bizarre joke. As I was strolling along with huge Douglas Fir and Cedar trees all around me, my focus was on symphonic forms and the idiosyncrasies of various composers. My thoughts were all consuming, unaware of my surroundings and anxious to get this test over with. Then suddenly a rhythmic tapping could be heard directly over my head. It was the common sound of a woodpecker. I did what I believe anyone would do when a woodpecker knocks on the tree just two feet away. I looked up. The bird's timing and aim could not have been more perfect. I didn't see the woodpecker. As my head pointed upward, the bird poop landed directly in my left eye.
The immediate pain was excruciating. It was a sharp burning pain unlike anything I had experienced. I put a hand over the eye and immediately started an all out sprint to the campus, passed the gym, the math building, the science building, the library all while pushing my palm against my face as if I were holding the eye inside its socket. As I finally reached the medical clinic on the far side of campus, about a mile away, I wondered if I would be blind from the intense burning. Opening the eye just revealed a dark blur and even more pain. I had never set foot into the clinic but I thought they would they would surely help and maybe give a prognosis of what I could expect. Most of all, I had to find relief from the pain.
When I arrived at the clinic, I explained what had happened to the receptionist. I'll never forget her reaction. She laughed. I was in terrible pain and she just laughed. She picked up the phone and told somebody that a patient just walked in saying a bird pooped in his eye. I knew that students would come up with a lot of medical complaints during finals week. Sometimes it was due to stress from the finals and some would look for a medical excuse to not take a final. Her reaction to my complaint indicated that she thought I had staged the whole thing to get out a test.
They brought me back to an exam room where a physician was smiling, with an assumption that I was faking the whole thing. He said, "I've been here eight years and if a bird did what you're saying, it would be a first." He looked at my eye and while still chucking admitted that yes, there was in fact a large amount of bird poop under my lids that were closed for the previous twenty minutes. Within a couple minutes, three clinic workers were in my room just to watch (and giggle) as the physician pulled long strings of poop from my eye. The pain was still intense. It wasn't one bit humorous to me, especially since the doctor didn't appreciate my level of discomfort. He eventually gave me some eye drops and sent me on my way with a note to give to the music history professor. It said "Please excuse this student from the final. A bird pooped in his eye."
By the time I reached the music building, the final was over. The professor was leaving the room when I caught up with her. The left side of my face was bright red and my left eye was also red. I gave her the note and explained what had happened. I'm still not sure if she believed my story but she gave me credit to be the first person in her teaching career to come up with such a unique excuse. I was allowed to take the final the following day. I did get an "A."
I was walking through the woods, on my way to a music history final exam. There would be questions like "Who is this composer and what information brings you to that conclusion?" The professor, a Hungarian music professor with a thick accent would drop the needle on an obscure piece of music and give us three minutes to complete the answer. She would also ask us about various forms of instrumental music, then vocal music and every combination of solo or ensemble works. It was a difficult test but I felt ready and confident. Getting an "A" on the final would assure and "A" for the class.
The next thing to happen, as I was walking along brought great joy to the college medical clinic. It was such a rare occurrence that the word spread throughout the college as a bizarre joke. As I was strolling along with huge Douglas Fir and Cedar trees all around me, my focus was on symphonic forms and the idiosyncrasies of various composers. My thoughts were all consuming, unaware of my surroundings and anxious to get this test over with. Then suddenly a rhythmic tapping could be heard directly over my head. It was the common sound of a woodpecker. I did what I believe anyone would do when a woodpecker knocks on the tree just two feet away. I looked up. The bird's timing and aim could not have been more perfect. I didn't see the woodpecker. As my head pointed upward, the bird poop landed directly in my left eye.
The immediate pain was excruciating. It was a sharp burning pain unlike anything I had experienced. I put a hand over the eye and immediately started an all out sprint to the campus, passed the gym, the math building, the science building, the library all while pushing my palm against my face as if I were holding the eye inside its socket. As I finally reached the medical clinic on the far side of campus, about a mile away, I wondered if I would be blind from the intense burning. Opening the eye just revealed a dark blur and even more pain. I had never set foot into the clinic but I thought they would they would surely help and maybe give a prognosis of what I could expect. Most of all, I had to find relief from the pain.
When I arrived at the clinic, I explained what had happened to the receptionist. I'll never forget her reaction. She laughed. I was in terrible pain and she just laughed. She picked up the phone and told somebody that a patient just walked in saying a bird pooped in his eye. I knew that students would come up with a lot of medical complaints during finals week. Sometimes it was due to stress from the finals and some would look for a medical excuse to not take a final. Her reaction to my complaint indicated that she thought I had staged the whole thing to get out a test.
They brought me back to an exam room where a physician was smiling, with an assumption that I was faking the whole thing. He said, "I've been here eight years and if a bird did what you're saying, it would be a first." He looked at my eye and while still chucking admitted that yes, there was in fact a large amount of bird poop under my lids that were closed for the previous twenty minutes. Within a couple minutes, three clinic workers were in my room just to watch (and giggle) as the physician pulled long strings of poop from my eye. The pain was still intense. It wasn't one bit humorous to me, especially since the doctor didn't appreciate my level of discomfort. He eventually gave me some eye drops and sent me on my way with a note to give to the music history professor. It said "Please excuse this student from the final. A bird pooped in his eye."
By the time I reached the music building, the final was over. The professor was leaving the room when I caught up with her. The left side of my face was bright red and my left eye was also red. I gave her the note and explained what had happened. I'm still not sure if she believed my story but she gave me credit to be the first person in her teaching career to come up with such a unique excuse. I was allowed to take the final the following day. I did get an "A."
Friday, June 10, 2016
Results are in
The first of three results are in. All three tests are checking for the level of cancer cells left over.
Blood test: checks for something called M-spike or monoclonal spike. It's an indicator of the amount of cancer cells in the blood stream.
PET scan: Positron emission tomography is used with a radio active tracer to find active tumors.
Bone marrow aspiration: A core sample of bone marrow is pulled out of the hip. The sample is studied to determine the amount of cancer cells within the marrow. It hurts!
So far, the blood test results show my m-spike at 0.1. That's a very low score. I'd prefer a score of zero but I have no complaints. It used to be many times greater.
I'm in an easy chair right now with an IV in my arm, waiting for the radioactive substance to be injected. The PET scan will start in a few minutes. I'll be laying in a tube, unable to scratch my nose or any other body parts for a couple hours.
The bone marrow aspiration is scheduled for Monday. As usual, I have to go through it without sedation.
This follow-up group of appointments is a reminder lof iving here for so many months. I had hundreds of tests and treatments during the thirty-four weeks as a full time cancer patient. This short group of tests is nothing compared to last year.
Unfortunately, visiting the SCCA does remind me of the true ugliness of this disease. The faces of the other patients are new but their expressions and circumstances are the same. Many are looking for a cure but others are just hoping to add some time to their life. They don't want to die, not yet. Why them? Those of us with good relative (and I do include myself) should be grateful and sympathize with less fortunate cancer victims. Cancer needs to be defeated!
Wednesday, June 8, 2016
Seattle Results? (not yet)
The followup appointments at the SCCA are not over. It was set up as one day of tests and clinics but the doctors decided to extend my stay for more testing. They are going to check the cancer to see if it has advance or receded. I’ll have a Pet Scan on Friday and a bone marrow aspiration on Monday.
This is great news. They have pretty much cleared me of having GVHD. I had several signs of it earlier but the symptoms have faded. The only question left is how the cancer is doing. I’ll get a call sometime today or tomorrow with results from a blood test. The more detailed news will come sometime next week.
As far as my current state of being, I don’t have time to worry. I’ll either be nearly cured or the cancer may have advanced. Either way, I’m planning to eventually find complete health. As I’ve said before, cancer takes so much. It brings misery to so many good people. As long as I feel healthy, I’m not going to waste time worrying about what potential bad news. I won't give cancer the gift of my misery based on what "could" happen. The good things in life are keeping me far too busy.
Sunday, June 5, 2016
To Seattle!
It's off to Seattle and the Seattle Cancer Care Alliance. Since the SCCA was a huge part of my life for several months, I have some predictions regarding what will happen.
After a 12 hour fast, they will check my blood, then X-ray my chest. My bloodwork will show nothing significant except a warning to drink more water based on a high creatinine score. The X-ray will not show any alarming news regarding my lungs. Next, they'll put me in a sealed glass booth and have me breathe through a hose. She'll say "Blow! Empty your lungs." I will, then she will direct me to not inhale for 15 seconds. I'll pass out. Then she'll make me do it all over again.
The results of the Pulminary Function Test will show that my lungs are just fine or probably more than fine. I do play the tuba now and then. I may have one or two unknown tests before the clinic. The clinic is schedule for an hour and a half with a nurse, physicians assistant and a doctor. They will go over my test results, poke me and ask a thousand questions.
When it's over, they will me tell I'm doing great. Compared to so many others I know they're right. We will see how close my predictions will be. The jet engines are warming up. Thanks for reading.
Wednesday, June 1, 2016
Unremarkable
All of my test results are in. There was a rash of tests last week with some extra test thrown in at end of the week. They all came up as "unremarkable." I'm used to getting that type of comment on a test. High school and college math scores were certainly unremarkable. To be honest, my English, science, social studies, foreign language, health and art grades were all unremarkable.
But in medical speak, unremarkable is either a good thing or it just means the doctors don't have a clue why certain symptoms keep reoccurring. That's all fine with me. My symptoms are slowly becoming less annoying and I'm able to climb a flight of stairs without stopping to catch my breath.
I've always looked at myeloma as a playground bully, trying to intimidate victims into submission. With modern medicine on my side, I'd have to evaluate my cancer's efforts as, well....unremarkable.
But in medical speak, unremarkable is either a good thing or it just means the doctors don't have a clue why certain symptoms keep reoccurring. That's all fine with me. My symptoms are slowly becoming less annoying and I'm able to climb a flight of stairs without stopping to catch my breath.
I've always looked at myeloma as a playground bully, trying to intimidate victims into submission. With modern medicine on my side, I'd have to evaluate my cancer's efforts as, well....unremarkable.
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